Tuesday, April 30, 2013

It has been a rough couple days for me. And for Ed. It's slowly getting more and more real for us as life has the audacity to go on.

Ed has returned to work.

Laundry need to be done.

Brian needs to go to school.

I need to take a shower.

Oh, wait. I really do need to take a shower. Some parts of life just don't seem to take a priority at the moment.

Brian is not one of those parts of life.

Last night, on a hunch, I said to Brian - "I want you to know that Mommy and Daddy did NOT want Gavin to go to Heaven." He just stared at me - still as could be. I am never sure in his four year old mind what he's thinking. If he's wondering if we sent Gavin away. If he's worried that he'll be sent away. He continued to stare as we sat next to each other in Gavin's bed - Brian's new favorite place to be.

"Mommy and Daddy were very sad that Gavin had to die. We didn't want him to leave us."

He broke his silence with, "I have allergies."

I knew it. I suspected that he might associate Gavin's allergies with death. Right before we got to the emergency room, we were at the acupuncturist who helps us with both boys' allergies. She was actually the one who taught me the technique that eliminated (yes, eliminated) Brian's peanut allergy. That morning, in her office, I had shared with her that I was DETERMINED to eliminate their seasonal allergies - especially Gavin's who were pretty bad that morning. In Brian's mind, they both have allergies - and then Gavin went to the hospital - and he never came home.

"Yes, Brian. You DO have allergies. But you don't need to be afraid of your allergies. Gavin didn't die because of his allergies."

He continued to silently stare. This is very unlike him - to not be distracted or goofy. I could tell I was hitting on something important. I pressed on...

"You know the heart that beats in your chest - and mine? Your heart is one of the things in your body that keep you alive!" I explained.

"The doctors couldn't give him medicine to fix him so he died," he said.

"No, the doctor's couldn't give him medicine. His heart stopped beating in his chest - it just kind of broke."

He nodded his little head.

"That's why we are so sad. And that's why you sometimes see Mommy and Daddy crying. It's okay to cry - and if you are sad, you can talk to us."

"That's okay, Mommy. My angry birds make me happy," he assured me.

"Brian, I bet Gavin is so happy that you're sleeping and playing in his room. You know, you can talk to him anytime and he'll hear you!! You may not hear him - and you may not see him - but he'll hear you! Remember how I told you that Heaven's ALL around us - it's everywhere? Not just in the clouds?"

"Uh huh..."

"That means that Gavin is always around us - he'll always be part of everything we do!"

With that he stood up in Gavin's bed and said, "Hi Gavin! I love you! I miss you!"

"Do you think he heard me, Mommy?" he asked with his little voice and his BIG, hopeful eyes.

"Yes. I definitely think he heard you. Actually - I KNOW it."

"You can go, Mommy. Goodnight."

A couple months ago, I was asked to write a guest post on the blog Momastery - the HUGELY popular and inspiring "home" of Glennon Doyle Melton. Glennon just had her first book published, "Carry On, Warrior - Thoughts On A Life Unarmed" where she writes openly and honestly about her life. She calls it "shameless truth telling." Glennon has been changing lives over at Momastery by sharing her truth - and allowing other women, in turn, to feel they don't need to be ashamed of their own truths. While she's on her book tour, she's having guest writers and I was so, very honored that she asked me to be one of them. I had just sent her my finished post on April 3rd.

My guest post will be up on her blog tomorrow. It comes with a warning to those of you who know me well - or who have known me online for years. Let's just say, if you thought you knew everything about me from my blog - you are in for a surprise.

Many people ask me how I can continue to find the positive when I'm constantly fielding hit after hit, year after year. Or they wonder how I'm functioning after so much heartbreak. This will hopefully shed light on that. But my greatest wish in opening myself up to the world - especially now - is to show everyone that there really is nothing you can't get through. Even the death of two of your children.

One last thing... our little buddy, Miles, had a very successful liver transplant and is doing well. His Mom and I are in frequent contact and I'm starting to think we are long lost sisters. With her permission, I am sharing their CaringBridge page so that you can check in on Miles and express your support in her guestbook. I think all of us will always feel a special connection to Miles. And I know I speak for all of you when I say how relieved we all are that he got his liver. Now we pray that the next month goes well and the liver falls in love with it's new, adorable home.

17 comments:

Very intuitive to speak to your soon that way. Some of us to easily forget that children have fears like that after a loss.and maybe he will be able to see him sometimes, after my grandfather died, whom i was very close to, i get dreams of him checking up on me and seeing if everything is okay. I hope you all will be able to see Gavin soon even if it's just a glance. Stay strong

I agree with you, how dare life go on??? Everyone needs to stop and just realize that someone who was very important to his family is no longer here. There should be no work. There should be no laundry. There should be nothing but thoughts of Gavin. Unfortunately that is not life, I wish I could stop the world for you for just even one day, but alas, I can not. But your beautiful sweet littl boy Brian shows us all just how to go on, no matter how painful, that someday (even today) there are still little snippets of joy here and there and Brian can show you where they are, when you are ready to see them. You are great parents and I am wishing you peace and sending you love.

(((Hugs))) These kind of conversations are so hard, but so important. When I was pregnant for our youngest child, my son Shawn was so concerned and scared because he knew that his older brother Kyle had died. I assured him several times that Zach was much healthier, but it took him a long time to accept that. You are doing such a good job taking care of Brian in the midst of your grief.

This poem by W.H. Auden (recited in Four Weddings and a Funeral), reminds me so much of your statement about life's audacity to go on. But I disagree with the part about love not lasting forever, because it surely does. And with the part about nothing coming to any good, because Gavin is still spreading "good," and that goes on, too.

Stop all the clocks, cut off the telephone,Prevent the dog from barking with a juicy bone,Silence the pianos and with muffled drumBring out the coffin, let the mourners come.

Let aeroplanes circle moaning overheadScribbling on the sky the message He Is Dead,Put crepe bows round the white necks of the public doves,Let the traffic policemen wear black cotton gloves.

He was my North, my South, my East and West,My working week and my Sunday rest,My noon, my midnight, my talk, my song;I thought that love would last for ever: I was wrong.

The stars are not wanted now: put out every one;Pack up the moon and dismantle the sun;Pour away the ocean and sweep up the wood.For nothing now can ever come to any good.

i tried to comment once and it deleted (so if i'm doubling up i apologize) Please re-explain to him that his brother didn't exactly die of a broken heart....it may confuse or worry him more if he hears someone say they are heart broken, or their heart broke when they heard the news, etc.....just thinking out loud, not trying to interfere.....

I thought you did such a beautiful job at explaining to Brian the loss of Gavin. I thought about what skill and insight you had there. I signed up for organ donation today thinking of Gavin and your family the whole time. What you shared and Gavin's amazing little life inspired me to do so. Hugs to you dear Kate. I don't know if this means much from me a stranger but I just feel like saying good job you're a wonderful mother and doing amazing at helping little Brian process his grief. I wouldn't know where to start. Still thinking and praying for your family constantly.

As I was just praying for your family, i came to think and pray that God would hide you in the cleft with his Hand covering you, Ed and Brian. That he would shelter you also with His wings right now. The picture of covering, protecting, caring for you all right now in a mighty way. Just wanted to share this thought. With love to you all....

When we lost our daughter to a cord accident, I had to explain to my almost 4 year old son how sometimes you can get sick and the doctors can't fix it, but also that not everyone who gets sick will die. He would go days and weeks without questions, the he would ask again and I'd tell him the same thing. It is a process, and you are doing great, all things considered. All you can really do is be gentle to yourself and remember to breathe.

You and Ed and Brian are frequently in my thoughts and I wish you peace as you travel this unfortunate path. Just know that you aren't alone.

I never watch TV in the morning (well, other than Sesame Street). For some reason this morning I turned it on and heard something that struck me and made me think of you. A family with strong faith who had gone through a tragedy was asked why they thought God had done this...the response was, "God doesn't make things happen, but He allows them, and then walks alongside you and helps you get through it. He allowed His own Son to die because it served The purpose."

I'm so sorry you're going through this, and had to go through so many other tragedies. I don't at all mean that it was Gavin's PURPOSE to pass away so young....but just look at all the wonderful things that have been happening in his name and imagine all the people whose views on Organ Donation have been changed.

Your faith and grace have been amazing, and you're doing a wonderful job wth Brian. I'm sure it's going to be a long and painful process...but so many people are with you.

Your children are lucky to have you. I am so, so very sorry to read the loss of your beautiful son. My son Cale was stillborn almost three years ago and I've seen your blog before but was brought back to it tonight after reading about Gavin on Momastery.

You are an inspiration to every mother out there! Your strength and perseverance is extraordinary and your family is lucky to have you as a wife and mother. GOD sends his special children only to special mothers and Gavin was a special child. Thank you for your inspirational strength. As a mom of a special child, Gavin's life has given me a new strength to continue my walk thru this life with my daughter.

Momastory <3 I could just cry and cry. And it is so relieving I almost feel it is wrong and that I should just stop reading. And I don´t. And I can´t. And I don´t know, maybe there is something wrong with me. Why do I need to read over other people tragic? Even though it is far more than only tragic of course I know that, but it is still a lot to cry about. Still it makes me look out for you and I can´t feel anything but gratitude to find your blog, to know there are such special people in this world, just blood and flesh and bones and sorrow and love and devotion. And I so love to see Gavins shiny eyes and that little smile of his. Maybe there is that, just a simple answer to it, I just really need all of this now. Thank you for giving!! <3

Who I Am...

Hi! I'm Kate. I'm a positive thinker, an amateur blogger, a jokester, and a reality TV junkie. I'm also very lucky to be a stay at home Mom to Gavin and Brian. I have a husband that has a big laugh, a big heart and a big talent for cooking. (Thank God) Our life is not always easy, but it turns out it's more than I ever dreamed it would be. I write about Gavin's disability, his miraculous progress, Brian's successful recovery from a peanut allergy and a speech delay, my Rheumatoid Arthritis and infertility journey and our crazy, incredible, roller coaster of a life. I also remember and honor our daughter, Darcy, who we met after 5 1/2 months of my pregnancy.

I feel honored that you're here to get to know us.

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Gavin's Playground Project

Gavin's Playground Project was born from my desire to see an "All Abilities" playground built at Nemours/A.I. duPont Hospital for Children in Wilmington, Delaware. This is the hospital where Gavin spent a lot of time during his life... and where he ultimately died, surrounded by friendly and familiar faces. To mark the one year anniversary of his death, I held a fundraiser on April 5, 2014. You can read all about it in THIS post.

We raised a LOT of money, but not enough for a playground! If you would like to contribute to help make this playground a reality - so no kids will ever have to sit on the sidelines watching their peers play - you can contribute directly to the hospital through the Chasing Rainbows fundraising page HERE. Your donation will go directly to the hospital for the playground and is tax deductible. You can also create your own fundraising team page and start collecting donations in honor of anyone you want!! There is also a mailing address on their page if you prefer to mail a check. Designate your contribution in memory of Gavin Leong - or write in that this is for the playground so your dollars will go to the right place. Thank you for your support of Gavin's Playground Project!

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Gavin's Trust Project

I created "Gavin's Trust Project" to help support Gavin's friends who receive services from the Chester County Intermediate Unit in Pennsylvania. I wanted to continue to try to "make the impossible... possible" for kids like Gavin, knowing well how hard it can be to get much needed "special needs" items. It makes me happy to know that even after his death, Gavin continues to help others. Click HERE to learn more about the Trust Project! All of your donations, big and small, will be added to Gavin's Trust Project to help therapists and teachers get what they need for children in this program. You can click the donate button (you don't need a PayPal account!) or, if you'd prefer, mail a check made out to CCIU and mail to Chester County Intermediate Unit, c/o Deb Hiller, 455 Boot Rd., Downingtown, PA 19335. Please be sure to add "Gavin's Trust Project" in the memo. Thank you on behalf of me and my little superhero!